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RA Diaries: Unsolved mysteries

It started with the Famous Five and Kalle Blomkvist; then, when we moved to the Americas, it continued with Nancy Drew and Trixie Belden and the Hardy Boys. When I got older, I was obsessed with Sherlock Holmes, Lord Peter Wimsey, Poirot and Miss Marple. I recently discovered Precious Ramotswe and William Monk.

The main attraction for me — apart from the quirky characters — was that, by the end of the book, there were always answers. The ghost was really the amusement park owner dressed up in a sheet, or the murderer was the victim’s long-lost butler, or the thieves were a rampaging pack of baboons. I suspect those tidy endings are what attract others to reading mysteries. After all, our real lives rarely wrap up so neatly.

The biggest mystery in my life is one I’ve been pondering for the last 34 years:

Why me? Why did I get RA? And why did I get it so young?
What happened to make my immune system suddenly turn on my joints?
No one seems to have a good answer for why auto-immune illnesses affect some and not others. When it comes to arthritis, it seems women get it far more than men. We outnumber them three to one. This may explain why I got it, but not my brother. And it makes me wonder if my young niece is at risk.

I say this because apparently auto-immunity is genetic. One example is diabetes. Type 1 diabetes is an auto-immune illness, where the immune system attacks the pancreas, destroying the insulin-producing islets of Langerhans. It has been pretty well-established that Type 1 diabetes runs in families.

I found out less than a month ago that RA runs in my family. A close relative told me my great-aunt — my grandfather’s sister — had RA, and got it in her 30s. I never knew that, but it’s not surprising. My family has a legacy of denial when it comes to dealing with health issues. The close relative who told me is the worst offender — anything medical makes this close relative cringe, and this person seems to almost revel in their ignorance of health problems, going so far as to tell me once they thought they had caused my RA by dropping me as a baby.

I’m still working on my issues with that. It’s not just that I’m disappointed that this relative never took any interest in even learning about the illness that affected me, never went to a doctor with me, never discussed it with me. I’m also angry. I was very young when I was diagnosed and I desperately needed an advocate, because I couldn’t advocate for myself. I sometimes wonder whether I’d be in the state I’m in now if this relative had been less passive.

But let’s set that aside, and go back to the evidence. There is RA in my family. Did it skip a generation? I don’t know, since I have no contact with this great-aunt’s children, or any of my other second cousins on that side. Either way, I got it.

My father and my brother didn’t, possibly because their Y chromosomes make them less susceptible. Or otherwise, they never experienced the right environmental trigger.

That’s the second part of this — research has shown that genes aren’t everything. Something has to set off the immune system, making it attack the healthy cells and continue to attack them. That something usually tends to be a virus, since viruses operate by injecting their own DNA into host cells, forcing those cells to help them replicate.

So what went wrong with my immune system? What virus did I get?

I suspect it was chicken pox. I got chicken pox as an infant, from two infected neighbor children who didn’t feel sick enough to stay in bed, but obviously should have. Chicken pox is a virus, and a member of the herpes family. I haven’t been able to find any studies tying chicken pox with arthritis, but the reason I wonder if that was my trigger is the timing.

I walked much later than most children, which really worried my mother. She told me I obviously wanted to walk, but that something seemed to prevent me. I would also cry intensely for no discernible reason, even when I was way too old to be having colic.

Was it the RA starting? Were my attempts to walk stymied by stiffening joints? Was my crying from joint pain? My mother was worried enough to take me to the hospital, but doctors could find no evidence there was something wrong. And I walked eventually.

Then again, X-rays don’t tend to show much unless there’s major damage (as evidenced from recent tests I’ve done on my painful knee), and MRI machines wouldn’t be around for another decade. I truly believe I had RA long before my diagnosis at age 5, and that chicken pox was the trigger. But believing isn’t enough — as Sherlock Holmes once put it, it is never a good idea to theorize ahead of one’s data.

I guess this will remain an unsolved mystery, at least until someone figures out what makes auto-immunity happen. Until then, I will take comfort in my beloved detective novels, and always cheer when the villain is unmasked by those meddling kids.

All text copyrighted by A.K. Whitney, and cannot be used without permission.